Our trio's adventure into 2 rare genetic syndromes – and the abundant life that is lived with them.

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When life is good.

I haven’t had the urge to write lately. I just haven’t. I’ve known from the very beginning of this blog that it would be a place for my emotional catharsis. I write when I hurt, I write when I’m angry. I write when I’m trying to pull myself up by my boot strings and attempting to wring thankfulness from my hard heart. I write when I’m confused or scared or frustrated.

I realized today that I rarely write because things are good. But not because I’m so distracted by life being good I forget to… I don’t write when things are good because I don’t expect them to stay that way for long. Why spend time writing about the good when it will most likely go away quicker than I can proofread this entry?

In preparation for mission work, Ben and I were required to take quite a fewpsychological tests, assessing our strengths and psychological well-being (ha). One of the tests, StrengthsFinder, showed that one of my top 5 strengths is Positivity: always looking on the bright side, making the best of a situation.

On the flip side, another test showed that I “live with an impending sense of doom”. I laugh every time I think about such a stark contrast in myself: I’m a very positive person… very positive that something terrible is going to happen. 🙂

When discussing these results with the psychiatrist hired by our mission agency, he also laughed at the difference. However, after learning my history, he wasn’t surprised. My mom was murdered when I was seven by her close friend. Three friends passed away my freshman year of high school. My dearest, wonderful uncle who got into a motorcycle accident died on the day he was supposed to be discharged from the hospital. We spoke to this psychiatrist while I was pregnant with E, and I smiled and said, “Well, I expect something bad to happen with this pregnancy too,” we laughed… and she was born a month later 2 months early, then was diagnosed with a genetic condition that even my impending sense of doom didn’t expect.

This impending sense of doom regulates my life, but not in a way that I am against. Every time we go to the hospital, I try to walk slowly outside with E, just in case we lose her during that stay and it’s the last time she feels the wind on her face. I hold her until she falls asleep every night, just in case she doesn’t make it to see the morning light. I take a video of her almost every day, just in case she regresses or passes away and I have something to remind us of what she used to be like. I memorize her face, I soak in her glow and I rejoice for each milestone as though she just won a Nobel Prize. When life is good, I am acutely aware that it is good, because I know what it’s like when it’s not… and because it could be fleeting I am aware that I must take hold of it. This impending sense of doom doesn’t damper our good days… it cements them in sunshine.

So, to all of my Negative Nancys out there, I feel ya. To my Positive Patricias, I’m with you too. I pray that if you identify as one or the other, that you find both in yourself. If you’re Negative, search for sunshine. If you’re Positive, cement those golden days. And whoever you are, give a hug to someone today. Pass a prayer. Send a smile. We’re all in this together, when life is good… and when it isn’t.

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One thought on “When life is good.”

You continue to overwhelm me with your responses to life’s journey. Your experiences prior to E. were gripping, and your plans for the future were cut short; in it all, you hang on to God’s promises and navigate so beautifully along with your awesome mate. It’s no wonder E. is so amazing with such parents! God is using you mightily!
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